|
| A) | nurse-centered. | ||
| B) | patient-centered. | ||
| C) | physician-centered. | ||
| D) | None of the above |
Prior to the 1960s, medical care decisions were part of the paternalistic role of physicians in our society. Patients readily acquiesced care decisions to their physicians because they were regarded almost as family. What drove this resolve of patients to acquiesce their medical care and treatment decisions to their physicians? David Rothman, as discussed in his book, Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making, believes physicians were given such latitude by their patients because they were well-known and trusted by their patients and the community in which they practiced [1]. There were essentially no specialists. One physician took care of a patient and family for a lifetime. The frontier physician often knew the patient from birth to adulthood, made house calls, and was a family friend who knew best what the patient should do with a healthcare concern. Since the 1960s, physicians have generally become strangers to their patients.
| A) | The Joint Commission, case law, and the medical technology boom | ||
| B) | The Joint Commission, case law, and research and experimentation | ||
| C) | World War II research and experimentation, presidential elections, and the Joint Commission | ||
| D) | World War II research and experimentation, increased medical technology, and modernization of healthcare structure and organization |
The trend away from the family doctor making all the healthcare decisions toward a healthcare system replete with specialists, policy makers, ethical codes, administrative codes, and informed consent was brought about largely by three events in U.S. History. First, World War II research and experimentation (e.g., experimentation on concentration camp prisoners by the Nazis, research on atomic bomb survivors) brought attention to people as test subjects and what rights should be recognized on their behalf. Second, the modern structuring and organization in healthcare delivery moved patients from their familiar surroundings of home and neighborhood clinics to the often intimidating, large hospital. Third, the medical technologic boom brought life-saving interventions; people now live longer due to major advances, such as improved diagnostic procedures, antibiotics, new surgical techniques, and vaccines.
| A) | the Tuskegee experiment, the Willowbrook State School experiment, and the Belmont report. | ||
| B) | the Belmont report, the Los Alamos project, and the elderly patients with chronic illness injected with live cancer cells. | ||
| C) | elderly patients with chronic illness injected with live cancer cells, the Tuskegee experiment, and Nutrasweet effects on teenagers. | ||
| D) | the Willowbrook State School experiment, the Tuskegee experiment, and elderly patients with chronic illness injected with live cancer cells. |
Extensive publicity about three research projects resulted in the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The first project involved elderly patients with chronic illness who were injected with live cancer cells in an effort to discover whether the cells would survive in a person who was ill but did not previously have cancer. No consent was obtained from patients or family members before proceeding.
The second project began in 1932, when the Public Health Service initiated a syphilis study on 399 black men from Tuskegee, Alabama. The goal of the study was to observe the men over a period of time to examine how the disease progressed in individuals of African descent. When the study began, there was no cure for the disease; however, fifteen years into the study, penicillin was discovered to be a cure for syphilis. The research participants were never informed, and treatment was withheld in spite of the fact that by the end of the experiment in 1972, 128 men had died either from the disease or related complications [2].
Finally, in 1967, children with mental retardation at the Willowbrook State School, New York, were given hepatitis by injection in a study that hoped to find a way to reduce the damage done by this disease. Although consent was obtained in this study, the consent sometimes had an element of coercion. Gaining admission to the school was difficult and parents were given a guarantee their child would be admitted if they consented to the participation of their child in the study.
| A) | Tuskegee case | ||
| B) | Nancy Cruzan case | ||
| C) | Karen Ann Quinlan case | ||
| D) | Protection of Human Subjects case |
It was the New Jersey Supreme Court Decision in the Karen Ann Quinlan case that brought bioethics to the level of the individual through the media and transformed physician paternalistic authority into patient-physician shared decision making [6]. Patient autonomy issues came into public focus in the 1970s when the legal community set a precedent for deciding withdrawal/withholding of life-sustaining treatment. Although there were many related cases with decisions on medical treatment and decision making for competent and incompetent patients, two cases are recognized as landmark cases and were the most important in influencing the medical and legal community. These two cases were most responsible for moving the primary healthcare decision making into the hands of the individual. These court cases are the previously mentioned New Jersey Supreme Court Decision in the Matter of Karen Ann Quinlan (1976) and the U.S. Supreme Court Decision in the Matter of Nancy Cruzan (1990) [7]. From these two cases, and more specifically from the Nancy Cruzan case, the Patient Self-Determination Act (PSDA) of 1990 was enacted [8].
| A) | physician-assisted suicide. | ||
| B) | withdrawing of ventilator support from a permanently unconscious patient. | ||
| C) | removing an artificial feeding tube from a permanently unconscious patient. | ||
| D) | None of the above |
In the case of Karen Ann Quinlan, the concept of acknowledging a patient's right and, in this case, the family's right to speak for an individual came to the public via the televised and printed news media. The plight of Karen and her parents began in 1975 when she presented at the local hospital, unconscious, possibly from ingestion of a mixture of alcohol and barbiturates. Placed on a ventilator and with little hope of regaining consciousness, her physicians related this grim prognosis to Karen's parents. Karen's father went to the New Jersey court requesting he be made his daughter's guardian and in so doing would be permitted to consent (for her) to discontinue ventilator support. The New Jersey Attorney General and the County Prosecutor stood firmly embedded in their advisement that to remove the ventilator from Ms. Quinlan constituted criminal homicide. Medical experts testified that under the current "medical standards, practice, and ethics," the ventilator must be continued [6].
| A) | the withdrawing of ventilatory support. | ||
| B) | the removal of an artificial feeding tube. | ||
| C) | the family members spoke for the individuals. | ||
| D) | None of the above |
In 1983, Nancy Cruzan presented to the local hospital in a comatose state, a result of an automobile accident that left her in a persistent vegetative state (PVS). What links Ms. Cruzan's case to the principle of the patient's autonomy (and subsequently to issues of right to die) and to the Karen Ann Quinlan case is the fact that neither individual could speak for herself once the actual situation requiring a decision presented itself. Therefore, the two cases are linked by the fact that family members went forward to speak for the individuals.
| A) | incompetent patients have the same rights as competent patients. | ||
| B) | the right to refuse treatment is an issue to be decided at the state level. | ||
| C) | artificial nutrition and hydration are not considered medical treatment. | ||
| D) | the decision-making process should never be made in the clinical setting. |
Over the years, from the Quinlan and Cruzan cases to the many others (including the more recent Schiavo case) that address patients' rights to refuse treatment and the idea of who can speak for incompetent patients, state courts began to address the issues explicitly. Multiple states reached substantial agreement that:
Competent patients have a constitutional and common-law right to refuse treatment.
Incompetent patients have the same rights as competent patients.
The interests of the state opposing this right are virtually nonexistent in the case of competent patients and very weak in the case of incompetent patients whose prognosis for recovery is dim.
The decision-making process should generally occur in the clinical setting without resort to the courts, which are available to assist in decision making when an impasse is reached.
In making decisions for incompetent patients, surrogate decision makers should effectuate the patient's own preferences expressed before the patient lost decision-making capacity (the subjective standard); however, if these references are not known, the surrogate, based on whatever evidence is available, should approximate what the patient would have wanted (the substituted judgment standard). If there is no information about the patient's preferences, the surrogate should make a decision that is in the patient's best interests (the best interests standard).
In ascertaining an incompetent patient's preferences, the attending physician and surrogate may rely on the patient's "advance directive," which may be written or oral.
Artificial nutrition and hydration are medical treatments and may be withheld or withdrawn under the same conditions as any form of medical treatment.
| A) | state level. | ||
| B) | federal level. | ||
| C) | county level. | ||
| D) | hospital level. |
Although this multi-state consensus was not without exception, these were the precursor principles to the PSDA of 1990, a federal law given over to the states to implement as of December 1, 1991 [8]. This new legislation applied to hospitals, nursing homes, hospice, HMOs/PPOs, and any other facilities that received funds from Medicare or Medicaid programs. It mandated that each of the affected facilities must advise their patients of their legal rights and options for accepting or refusing treatment if they (the patients) should become unable to speak for themselves. The primary provisions of the PSDA are:
Providers must offer written information and summaries of pertinent institutional policies to all adult patients regarding their rights under state laws to accept or refuse treatment and to make advance directives.
The patient's record must be documented to indicate whether the patient has an advance directive.
Institutions may not discriminate against or refuse care to a patient based upon whether the patient has executed an advance directive.
Institutions have an affirmative obligation to comply with requirements of state law regarding advance directives.
Institutions must provide (individually or with others) education to staff and community regarding issues associated with advance directives.
State Medicaid laws must be amended to require participating healthcare institutions to furnish the written information mentioned above.
With the Department of Health and Human Services' assistance, state Medicaid agencies must develop written descriptions of state laws on advance directives, and these materials are to be distributed by participating healthcare institutions.
| A) | require clients to make out a living will. | ||
| B) | provide staff and the community education regarding issues associated with advance directives. | ||
| C) | halt care if there is not specific knowledge of the availability of an advanced directive for the patient in need of care. | ||
| D) | All of the above |
Although this multi-state consensus was not without exception, these were the precursor principles to the PSDA of 1990, a federal law given over to the states to implement as of December 1, 1991 [8]. This new legislation applied to hospitals, nursing homes, hospice, HMOs/PPOs, and any other facilities that received funds from Medicare or Medicaid programs. It mandated that each of the affected facilities must advise their patients of their legal rights and options for accepting or refusing treatment if they (the patients) should become unable to speak for themselves. The primary provisions of the PSDA are:
Providers must offer written information and summaries of pertinent institutional policies to all adult patients regarding their rights under state laws to accept or refuse treatment and to make advance directives.
The patient's record must be documented to indicate whether the patient has an advance directive.
Institutions may not discriminate against or refuse care to a patient based upon whether the patient has executed an advance directive.
Institutions have an affirmative obligation to comply with requirements of state law regarding advance directives.
Institutions must provide (individually or with others) education to staff and community regarding issues associated with advance directives.
State Medicaid laws must be amended to require participating healthcare institutions to furnish the written information mentioned above.
With the Department of Health and Human Services' assistance, state Medicaid agencies must develop written descriptions of state laws on advance directives, and these materials are to be distributed by participating healthcare institutions.
| A) | prime directive. | ||
| B) | advance directive. | ||
| C) | last will and testament. | ||
| D) | financial durable power of attorney. |
Finally, legislation was created to keep end-of-life medical decision-making issues out of the courts and in the appropriate arena, with the appropriate players: the patient/family and the healthcare professionals. The central focus of the law is the provision of patient education. The means or the tool for the individual to document his or her wishes for future healthcare decisions is called an advance directive. There are two types of advance directives available. Although both are not required to be completed together, most people are encouraged to do so.
| A) | patients to write their own treatment orders on the physician order form. | ||
| B) | patients to document their treatment wishes should they become unable to speak for themselves. | ||
| C) | the named surrogate to act on the financial matters of the patient who is unable to speak for himself/herself. | ||
| D) | the patient to name an attorney-in-fact to act on behalf of him/her for healthcare decisions, should the patient become unable to speak for himself/herself. |
The first type of advance directive is called a physician directive, sometimes called directive to physician. The precedent form is the living will, an earlier, legally non-binding form. The living will allowed an individual to state his/her treatment choices should he or she be found in a terminal state, comatose, and/or in another condition leading to imminent death for which the physician saw no cure. The patient stated that he/she be allowed to die naturally without medical intervention, with only comfort measures employed.
| A) | advance directives. | ||
| B) | ethical issues in providing care. | ||
| C) | patient involvement in care decisions. | ||
| D) | All of the above |
| A) | Negotiating, harboring, enlisting, issuing, delegating, acceptance | ||
| B) | Denial, anger, resistance, bargaining, acceptance, enlisting, issuing | ||
| C) | Autonomy, beneficence, non-maleficence, fidelity, right-to-know, justice, veracity | ||
| D) | Dependence, benevolent, non-benevolent, finality, wrong-to-know, judicious, veracity |
The major ethical principles of significance to physicians and other healthcare personnel are respect for persons, autonomy, veracity, beneficence, non-maleficence, justice, fidelity, and right-to-know [10]. These terms are used widely in bioethics and should be briefly defined:
Respect for persons requires that each individual be treated as unique and be entitled to treatment that is respectful of their human dignity.
Autonomy refers to the right of the patient to determine what will be done with his or her own person. It also involves the patient's right to have confidentiality of their own medical history and records, and for the medical personnel to safeguard that right.
Veracity involves truthfulness. Physicians are obligated to be truthful with patients and/or their families and should avoid withholding information. This allows them to make informed choices.
Beneficence refers to the ethical principle of doing or promoting good.
Non-maleficence correlates to Hippocrates' principle of doing no harm.
Justice is broadly understood as fairness; however, it pertains to what someone or a group is owed. It also relates to the distribution or allocation of a scarce resource or treatment. The principle of justice can also be applied in decisions about end-of-life care, such as the right of the patient to receive adequate palliative treatment.
Fidelity means remaining faithful to promises made.
Right-to-know is the principle of informed consent.
| A) | truthfulness. | ||
| B) | ability to self-pay for services. | ||
| C) | making and keeping promises. | ||
| D) | personal rights and self-determination. |
The major ethical principles of significance to physicians and other healthcare personnel are respect for persons, autonomy, veracity, beneficence, non-maleficence, justice, fidelity, and right-to-know [10]. These terms are used widely in bioethics and should be briefly defined:
Respect for persons requires that each individual be treated as unique and be entitled to treatment that is respectful of their human dignity.
Autonomy refers to the right of the patient to determine what will be done with his or her own person. It also involves the patient's right to have confidentiality of their own medical history and records, and for the medical personnel to safeguard that right.
Veracity involves truthfulness. Physicians are obligated to be truthful with patients and/or their families and should avoid withholding information. This allows them to make informed choices.
Beneficence refers to the ethical principle of doing or promoting good.
Non-maleficence correlates to Hippocrates' principle of doing no harm.
Justice is broadly understood as fairness; however, it pertains to what someone or a group is owed. It also relates to the distribution or allocation of a scarce resource or treatment. The principle of justice can also be applied in decisions about end-of-life care, such as the right of the patient to receive adequate palliative treatment.
Fidelity means remaining faithful to promises made.
Right-to-know is the principle of informed consent.
| A) | the principle that all people are not of equal value. | ||
| B) | lying is ethical if it is seen to be in the person's best interest. | ||
| C) | based upon the principle that people should always be treated as a means to an end. | ||
| D) | a system of ethical decision making that stands on moral rules and unwavering principles. |
Under the deontologic umbrella, an action is deemed right or wrong according to whether it follows pre-established criteria known as imperatives. An imperative in our language is viewed as a "must do," a rule, an absolute, a black-and-white issue. This is an ethic based upon duty linked to absolute truths set down by specific philosophical schools of thought. As long as the principles dictated by these imperatives are met with dutiful compliance, one is said to be acting ethically.
| A) | It is known as the virtue system of ethics. | ||
| B) | The fundamental maxim is to do good and avoid evil. | ||
| C) | Both A and B | ||
| D) | None of the above |
Natural law ethics, also known as the virtue system of ethics, is a system in which actions are seen as morally or ethically correct if in accord with the end purpose of human nature and human goals. The fundamental maxim of natural law ethics is to do good and avoid evil. Although similar to the deontological theoretical thought process, it differs in that natural law focuses on the end purpose concept. Further, natural law is an element in many religions while at its core it can be either theistic or non-theistic.
| A) | certified by a judge as competent. | ||
| B) | able to converse with healthcare staff. | ||
| C) | proven to make healthy and correct decisions. | ||
| D) | able to understand information relevant to the decision at hand and to weigh the possible alternatives. |
From an ethical point of view, the patient is a capable decision maker if he or she can understand information relevant to the decision at hand, interact and communicate with caregivers about the decision, and weigh the possible alternatives. A general checklist upon which to set up an ethical framework comes from the Handbook for Hospital Ethics Committees. One might abide by the following steps [18]:
Collection of a database
Case presentation
Identification of medical problems
Identification of psychological problems
Identification of an ethical dilemma
Identification of legal or policy issues
Discussion of ethical issues
Suggestions for approaches to problems
Discussion with initiator, patient, if possible, and other individuals directly involved with specific patient or problem
Documentation of issues discussed and suggested approaches to be placed in the patient's chart
| A) | The nurse | ||
| B) | The physician | ||
| C) | The patient/family | ||
| D) | An objective outside party |
Whenever possible, the patient or family makes the final healthcare decision. The first and most important step is the collection of a database, which involves gathering and assessing the facts. The nursing staff can be instrumental in facilitating the stages of ethical action. The following is a general outline of each step and the process that develops as one moves through the individual stages. In each step, questions are offered to help the healthcare professional gather all the information necessary to assist the patient and healthcare team in the decision-making process.
| A) | sorting the issues. | ||
| B) | solving the problem. | ||
| C) | implementing the decision. | ||
| D) | gathering and assessing facts. |
Whenever possible, the patient or family makes the final healthcare decision. The first and most important step is the collection of a database, which involves gathering and assessing the facts. The nursing staff can be instrumental in facilitating the stages of ethical action. The following is a general outline of each step and the process that develops as one moves through the individual stages. In each step, questions are offered to help the healthcare professional gather all the information necessary to assist the patient and healthcare team in the decision-making process.
| A) | The nurse's | ||
| B) | The physician's | ||
| C) | The patient's/family's | ||
| D) | The healthcare facility's |
There are five fundamental components to the cognitive decision-making process as identified by ethicists Kenyon and Congress. They encompass naming the dilemma, sorting the issues, solving the problem, acting, and evaluating and reflecting [10,15]:
Naming the dilemma involves identifying the values in conflict. If they are not ethical values or principles, it is not truly an ethical dilemma. It may be a communication problem or an administrative or legal uncertainty. The values, rights, duties, or ethical principles in conflict should be evident, and the dilemma should be named (e.g., this is a case of conflict between patient autonomy and doing good for the patient). This might happen when a patient refuses an intervention or treatment that the physician thinks would benefit the patient. When principles conflict, such as those in the example statement above, a choice must be made about which principle should be honored.
Sort the issues by differentiating the facts from values and policy issues. Although these three matters often become confused, they need to be identified, particularly when the decision is an ethical one. So, ask the following questions: what are the facts, values, and policy concerns, and what appropriate ethical principles are involved for society, for you, and for the involved parties in the ethical dilemma?
Solve the problem by creating several choices of action. This is vital to the decision-making process and to the patient's sense of controlling his or her life. When faced with a difficult dilemma, individuals often see only two courses of action that can be taken. These may relate to choosing an intervention, dealing with family and friends, or exploring available resources. It is good to brainstorm about all the possible actions that could be taken (even if some have been informally excluded). This process gives everyone a chance to think through the possibilities and to make clear arguments for and against the various alternatives. It also helps to discourage any possible polarization of the parties involved. Ethical decision making is not easy, but many problems can be solved with creativity and thought. This involves the following:
Gather as many creative solutions as possible by brainstorming before evaluating suggestions (your own or others).
Evaluate the suggested solutions until you come up with the most usable ones. Identify the ethical and political consequences of these solutions. Remember that you cannot turn your ethical decision into action if you are not realistic regarding the constraints of institutions and political systems.
Identify the best solution. Whenever possible, arrive at your decision by consensus so that others will support the action. If there are no workable solutions, be prepared to say so and explain why. If ethics cannot be implemented because of politics, this should be discussed. If there are no answers because the ethical dilemma is unsolvable, the appropriate people also must be informed. Finally, the patient and/or family should be involved in making the decision, and it is imperative to implement their choice.
Initiate and act because ethics without action is just talk. In order to act, make sure that you communicate what must be done. Share your individual or group decision with the appropriate parties and seek their cooperation. Implement the decision.
Evaluate and reflect, as perfect ethical decisions are seldom possible. However, healthcare professionals can learn from past decisions and try to make them better in the future, particularly when they lead to policy making. To do this:
Review the ramifications of the decision.
Review the process of making the decision. For example, ask yourself if you would do it in the same way the next time and if the appropriate people were involved.
Ask whether the decision should become policy or if more cases and data are needed before that step should occur.
Learn from successes and errors.
Be prepared to review the decision at a later time if the facts or issues change.
